POS0360-PARE EDUCATIONAL NEEDS AMONG PATIENTS WITH RHEUMATOID ARTHRITIS AND HEALTH PROFESSIONALS IN RHEUMATOLOGY: A SWISS CROSS-SECTIONAL QUALITATIVE ANALYSIS
Authors: A. Grosjean, C. Madelaine-Bonjour
Journal: Annals of the Rheumatic Diseases (2022)

Background The content and delivery of patient education (PE) should be individually tailored and needs-based for people with inflammatory arthritis 1 . Therefore, a patient trained in PE joined forces with a rheumatology clinical nurse specialist to explore the needs for the management of patients with RA in a Swiss local context (rheumatology department of a university hospital). Objectives To identify the difficulties and needs of patients with RA regarding their disease and its management in a local context, from both perspectives: patients and health professionals (HPs). Methods We developed 2 different semi-structured questionnaires for each surveyed group. They were distributed to 93 patients and 62 HPs during Summer 2020. Only the fully completed surveys were analysed. A qualitative analysis of the answers to the open questions was carried out and the phenomena thus highlighted were then quantified. Results We collected 38 patient (40%) and 35 HP (56%) questionnaires, and 23 patients (25%) and 21 HPs (34%) filled them completely out. Participants among patients were mostly female (74%) with a mean (SD) age of 54,8 (10,9). Mean (SD) number of years of illness after diagnosis was 11,9 (12,6). HPs were nurses (57,1%), medical doctors (19%), occupational therapists (14,3%), physiotherapists (4,8%) and assistant nurses (4,8%). Almost half of HPs (48%) and 39% of patients experience difficulties to talk about sensitive topics like sexuality, financial or emotional difficulties. A third of patients (30%) wished a more supportive attitude from HPs and HPs (62%) would like patients to be more involved in their care, more specifically regarding autonomy and treatment adherence. A few HPs (9%) and patients (19%) want to improve patient-centred and personalised care. Most of HPs (81%) and patients (87%) state that they have no objection or reluctance to PE being developed in the department. Some HPs see PE as an additional workload (19%) and others as a tool to involve the patients more in their care (43%). HPs (43%) express a need for patient’s and disease’s management training and wish to acquire additional tools and methods to better assist their patients (43%). A third of them (33%) report a lack of communication, collaboration and interdisciplinarity to support patients. Furthermore, due to the lack of time and availability, 67% of them are not able to provide adequate time for meeting the patients’ needs. Some HPs feel powerless to help their patients (19%). Some others (18%) highlight the difference of perspectives and concerns between patients and HPs. Patients and HPs agreed on most of the main difficulties related to the disease and follow-up. It should be noted that HPs were not aware of the difficulties related to their patients’ sleep. The painful and distressing psychological and emotional impact of RA is the difficulty most cited by patients (74%) and the second most mentioned by HPs. More than half of patients (61%) have difficulty managing their pain. Conclusion The results of this study confirm the need for PE in the department. Communication is a challenge for both populations. HPs know their patients well, but patients and HPs have different expectations regarding disease’s management and follow-up. This work shows the importance of analysing educational needs: it brings out dimensions of the disease and its management that are sometimes hidden or underinvestigated. It thus helps to have a better understanding of the reality and difficulties as they are experienced by people in order to propose appropriate solutions. This work provides a basis for reflection and discussion for the future development and implementation of a PE program, based on the paradigm of the patient-HP partnership. In addition to being an example of an advanced and successful patient-HP partnership, it also demonstrates the benefits of such collaboration. References [1]Zangi HA, Ndosi M, Adams J, et al . EULAR recommendations for patient education for people with inflammatory arthritis Annals of the Rheumatic Diseases 2015;74:954-962. Disclosure of Interests None declared